Sunday, June 7, 2009

The Mic-Key Button

Alyssa had her permanent G-tube the Mic-Key button placed on May 12th. The first picture is the Mic-Key button closed and the second is with the attachment for feeding. It is pleasantly surprising how much easier the button is for us and how much Alyssa seems to like being without her NG tube. Utilizing the button for feeds is quick and effortless, cleaning is a breeze, and no one can tell it's there unless we tell them! It's nice to have Alyssa's face free of the duoderm and tape. I didn't like the idea of permanently placing "hardware" in our daughter. When first broaching the idea of the button, that is how I saw it..an invasion!

Now it's more like an acceptable version of body piercing. Not so sure if we'll ever get her ears pierced so here's an untraditonal piercing, just for her and its functional too!! (F.Y.I. I will be very unhappy if any of our other kids should choose to have untraditional body piercing~ yes this from a mom with tattoo's~ I know of what I speak.)

A few days prior to having the button placed we made changes to Alyssa's feedings. Her dietitian increased her feeds to 105cc's every three hours during the day and kept the 306cc's overnight. Instead of using Polycose to supplement my breast milk,the use of Carnation GoodStart was recommended. The goal is to eventually have daytime feeds only and allow Alyssa to truly rest at night. Yes, we'd like to eliminate overnight pumping. Can we do it? Yes we can! (ode to Bob)So when few days after having the tube placed, Alyssa seemed a little out of sorts we weren't too concerned. She spit up a bit the 1st day after having the button. Then a little more the next day, by Friday she was projectile vomiting and pooping up a storm. Literally everytime she moved she'd poop and everytime she ate, she vomited. She didn't have a temperature so I followed up with her nutiritonist. All of our children had been soley breastfed, and other than the Polycose additive; Alyssa only had breastmilk. So I was thinking that the formula may have been affecting her in some way. Wrong!

It turned out by Friday night she had a temperature and unlike her usual self did not want to be touched. I was up with her all night and Saturday wasn't much better. By early evening she had a temperature of 103 degrees with Tylenol! So after a few phone calls and consults with her doctors, we headed to the ER at CHOP. On a good day this is a 45 minute drive, due to road work and traffic it took almost 2 hours!!

Once at the hospital Alyssa was admitted;they later determined that she had cellulitis. We stayed up all night Saturday as she had testing, bloodwork, x-rays to confirm correct tube placement. Around 2 am it was clear that part of the issue was the tube site as it was red and hot. By this point Alyssa cried/screamed anytime she was touched. She may have caught a bug too which would account for the vomiting/and frequent stooling. In the end after an allergic reaction to one antibiotic, Alyssa was placed on pain meds, tolerable antibiotics and Tylenol. It only took a few hours to see a difference and by Monday mid day our Alyssa's sweet disposition was back. Alyssa was discharged on Tuesday, three days after her arrival.

This was our first ER experience and unplanned hospital stay for Alyssa. Other than birth and her first surgery in April (for the tube, strabismus correction and skin biopsy), Alyssa in her 10 months had not required hospitlization. It was a lip biting experience, seeing her heart rate so high, her temperature so high and her pure discomfort. We are so thankful for God's mercy in that Alyssa pulled through rather quickly and without serious complications. It's been a few weeks now and we haven't had any other problems. We are still glad to have gone the G-tube route.

Friday, May 1, 2009

Catching Up

Alyssa resting right of her procedures.
Last I wrote we were preparing for the G-tube. I am happy to report that we are on the other side! Yes Alyssa had surgery the second week of April. Along with the G-tube placement, she had her left eye corrected and a skin biopsy. The only snag during the operation was the placement of the breathing tube. The anesthesiologist had to use a fiber optic scope to intubate her. If they had used the scope from the start it wouldn't have been as "traumatic" but it was introduced after 4 different doctors tried several times by the "traditional" method. This experience will now used as a teaching tool for anesthesiologist as it is going to be posted in the journal of anesthesiology. Aside from this Alyssa did wonderfully!! In two weeks we will return for a follow up appointment. Hopefully at that time Alyssa's button will be inserted, right now she has a malecot. Her surgeon does a 2 step process because she believes the healing is better. Alyssa was in the hospital 4 days. We appreciated how carefully they treated her and the caution used for avoiding any complications.a close up view of the malecotAlyssa was a trooper. She was on morphine for the first day and weaned down to Tylenol before leaving the hospital. She drank 25 cc by mouth when she was allowed to "eat" again. She seemed to breath better and to enjoy not having the NG. Her eye even with the redness looked much better too! We are glad that we went through with this, even though it was hard emotionally. Alyssa being held by Daddy.
.You can see the redness of her eye from that surgeryAlyssa is 9 months old and 13lbs 9 ounces. We celebrate every day that we have with her. One, two hurdles cleared! Wonder what else this Trisomy race will bring??